• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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mast cell activation syndrome

  1. frozenborderline

    I have Hereditary Alpha Tryptasemia , what does this mean for my care?

    I have long had sensitivities to things like mold and outdoor toxins such as Mystery toxin Hell toxin Cyanobacteria Fire Retardant Associated Toxin There was always a lot of crossover with ME/CFS as being in good air helped my PEM and energy envelope more 5han any other treatment and...
  2. frozenborderline

    How do i get my doctor to pay attention to my case and be less scattered and more responsible ?

    I found an amazing immunologist and mast cell specialist. I thought "since my current me/cfs specialist is too scattered to help me well, this doctor should suffice, and maybe she can lead a bit more in treating my case rather than me having to do a lot of the steering". Well, our first visit...
  3. H

    Problems with Mast Cell stabilizers

    So I'm at my wit's end a bit this evening. I'm currently on a plan from my MCAS doctor to take Mast Cell stabilisers in the hope it calms my symptoms, but I've just tried a new one (Ketotifen) and I'm reacting badly to it, and I'm wondering what to do. The background to this is that initially I...
  4. frozenborderline

    Long Covid, MCAS and Environmental Toxins--Lake Tahoe 2.0?

    https://openletteropenmedicinefoundation.com/long-covid-and-environmental-toxins-lake-tahoe-2-0/ Is the CDC and general scientific community retreading ground from the Lake Tahoe outbreak that caused the invention of the CFS syndrome /category of illness ? Are they reinventing the wheel, so to...
  5. H

    Causes of MCAS?

    Hi all, I'm wondering if anyone has any info on what are the possible causes of MCAS? And if someone's looking to try to address the root cause of their MCAS what areas should they look into, and in what order of importance? I'm also interested in whether anyone here has managed to figure out...
  6. frozenborderline

    Open letter to the Open Medicine foundation

    Just the scant beginnings of a long-term advocacy project I'm working on Re environmental factors in this illness and having the omf address them. https://openletteropenmedicinefoundation.com
  7. frozenborderline

    "Go west young man", a podcast interview with a guest who did mold avoidance to put his illness in remission

    Here's a new one, particularly long, in which I interview a friend I knew from school who got sick with similar issues simultaneously to me and ended up pursuing mold avoidance in new Mexico. We talk about his whole journey but at the end we get into his visions for using permaculture to...
  8. frozenborderline

    Mast cell activation syndrome is not what it seems

    Many doctors present mast cell activation syndrome as if it's a syndrome where someone mast cells are on high alert for noreason, or for an idiopathic and possibly genetic reason, and so they get triggered by totally harmless things and cause issues. In my opinion. Nobody knows enough about mcas...
  9. L

    Anti IL4/5/13 for Mast Cell Disorders and Multiple Chemical Sensitivities and ME/CFS by proxy

    Lately several antibodies targeting the receptors IL4, IL13 and IL5 have been approved for a range of conditions : asthma, eczema and chronic rhinosinusitis. These new treatments efficiently down regulate Th2 mediated inflammation and relieve symptoms. They work best for people who have an...
  10. frozenborderline

    Critiques of common conceptions of MCAS

    https://atomicchesterton.blogspot.com/2020/06/critique-of-concept-of-mcas.html?m=1
  11. MariaMagdalena

    Brand New Rash with Petichiae. MCAS?

    Hi Everyone! Please forgive if this has been discussed elsewhere. I'm at the end of my cognitive endurance for the day and can't deal with sorting through threads at the moment. I developed 2 weird skin issues in the last week. This is highly unusual for me, but not unheard of in the long...
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